For 16 years, a few blocks away from me, Colleen smiled. For 16 years, a few blocks away from me, Colleen laughed. For 16 years, a few blocks away from me, Colleen lived with cystic fibrosis. At the age of 16, a few blocks away from me, Colleen passed away.
My best friend passed away at the age of 16. While I was left without my best friend by my side, I was also left with this inexplicable sensation that I had not done enough for her, for the disease, for the community. The response I received in return from those around me was one of pity. They viewed my “make a difference” mentality as cute and claimed my guilt was unfounded. They did not understand and were incapable of understanding. I was doing this for Colleen, but I was also doing this for Colleen's older sister, Erin, who also has CF. Thus, it was simply not a want to do more, it was a need. It was a responsibility.
This obligation led me to find ways to advocate, specifically the Cystic Fibrosis Foundation's Teen Advocacy Day. The event brings teens from across the country to Capitol Hill to advocate on behalf of their loved ones with CF. The simplicity of advocacy resonated with me. By telling my personal story, I was able to make a difference that had tangible results. I no longer had to wonder if my work was changing anything. This time around I could see it, and slowly the guilt that had been eating at me began to diminish.
The impact of advocacy on my life was so powerful that I applied to be an intern at the CF Foundation, focused on Teen Advocacy Day. To my sincere surprise, I was chosen for the internship, along with Erin Baranko and Paul Freeman. We held the title of public policy interns and were specifically assigned to help organize and plan Teen Advocacy Day.
As I stepped into the Foundation's building on my first day of work, I suddenly felt an overwhelming sense of accomplishment. This was not the feeling of my accomplishment, but of the Foundation's accomplishments. As cliché as it sounds, I was star-struck to be surrounded by individuals who helped to ensure that Colleen lived as long as she did and those who were truly “adding tomorrows” for Erin.
The employees in the building, in every single position, were simply unaware of the true impact and power of their jobs. I felt confident that if any other loved one of someone with CF walked into that office, they would marvel at the individuals walking those halls. My superheroes were oblivious to my high regard for them.
I was astonished to learn that most of the Foundation staff had no prior connection to CF. I was there because I felt I had to be, but these individuals were there because they latched onto the story and progress of this disease. They latched onto the stories that I and others tell, day in and day out. Their motivation and drive to bring change motivated me more than I even knew possible.
I learned from their every move. Most important, I learned and discovered new avenues through which to channel my energy. Before my connection with the Foundation, I was overwhelmed by what I could specifically do to support change. I was lost.
My experience interning for the Foundation opened my eyes to the work imperative to reaching the ultimate cure for every individual living with cystic fibrosis. Not once in my 19 years had I ever felt more hopeful and confident about the future of this disease. While that may sound nice, unless you truly know me, you are probably unaware of the power of that statement. I am one of the most doubtful and “glass half empty” individuals. But there is no team of individuals I would trust more to fight for Erin. I still fight for Colleen, but this time around, I believe that the cure is in sight.